Small Bowel Dysmotility

[janiedelite]

This symptom of my dysautonomia kind of comes and goes, although I deal with some level of nausea all the time. I'm not below a healthy body weight. I force myself to eat, I just have so much pain and nausea 2-4 hours after I eat that now I thinking I should give my GI tract a break. This bad episode has lasted about 3 weeks now. I was thinking pushing through it and eating normally would eventually get my system back on track. I've also been resting as much as possible between meals. I have some carnation instant breakfast, and I think I'll just stick with liquids today.

I had a motility study at Mayo which showed high-normal stomach propulsion, very slow small bowel, and borderline slow colonic transit. During the time of the testing, I was feeling like I do now, pretty sick. So the doc was concerned that maybe I had a blockage of my intestine and a week later I had a barium swallow which looked at my stomach and small and large bowel. My motility during that test was normal, so the neurologist said that he believed my small bowel dysmotility is episodic in relation to the excessive adrenaline produced in response to my pooling. He said the adrenaline diverts blood from your gut, which slows it down. Made sense at the time.

Now I'm beginning to realize that any disruption in my sleeping or eating schedule really messes with my motility, increasing nausea and left-upper abdominal pain, and brings on a bad headache (also mostly on the left for some odd reason). This is why I had such slow motility the week after I arrived at Mayo, because of the stress of the travel. But within a week after that, my body had adjusted. I've struggled with reflux and abdominal pain since my teens and now I'm 36.

I have a bottle of phenergan from an ER trip over a year ago which has one more dose left and then I'm out. I think this is my sign to make an appointment with my PCP and ask for a refferal to a good GI doc. I haven't done it yet because I know there isn't much that can be done for small bowel dysmotility, except test for bacterial overgrowth and give antinausea meds.

I just feel so incapacitated. Along with the headache, I'm also very motion and light-sensitive during these times. I'm very bloated, rarely having BMs (very common for me lately), and when I do have them it's sometimes very crampy with diarrhea. Sorry for the specifics on that. But it's Not Fun.

[juliegee]

Sorry to hear of your troubles. Unfortunately, I can relate. Mine is also episodic & I also have the worsening dysautonomia symptoms & headaches when my GI troubles are at their worst.

I have a few ideas that might be helpful. One, even though you're not officially allergic to dairy- AVOID it especially during these bad phases. Carnation Instant Breakfast (with milk) is a bad idea. We learned about this at Hopkins. It's beneficial for everyone to avoid dairy during bad GI episodes. You probably also know all about low fat, low fiber. A white diet is a good thing during bad phases: white rice, white bread, white pasta. Broths, lean meats (chicken, turkey fish) and mushy cooked vegs and pureed fruits are also well tolerated. When I'm as bad as you are, I nibble on white rice & chicken broth for a few days.

I am struck by the fact that you're not taking a GI prokinetic. Even though your tum is emptying OK, your small bowel & colon seem to be slow. The same meds that speed up stomach emptying also help here. My son (and I-at times) uses small doses of EryPed (liquid erythromycin) before meals. It works like a charm for me. It replaces that nauseous feeling with sweet hunger. If the EryPed doesn't work (Try it first even if it hasn't helped in the past!) consider a low dose of domperidone. If you are experiencing symptoms of GERD, it's also important to treat that. Sometimes, even when things back up downstream, GERD can occur from the back-up.

Finally, I felt so much better once I learned I had to get my colon moving. Before I straightened that out, I was in the hospital repeatedly, unable to eat (nausea!!!!) , or drink, or poop. In retrospect, I think my body was shutting down with no fuel. My dysautonomia was awful and I also had the headaches you describe. After trying everything (zelnorm, amitiza, etc.) we settled on as much miralax as it takes to make things move. It takes a few days to get an effect, but once you do- don't stop. Keep up a maintenance dose up daily. Mine is 40 grams. I drink it all at once in the evening and take a half a phenergan 12.5mg with it. It can cause some nausea at those higher doses. The phenergan also helps me sleep.

Just a few ideas...Hope you're back to yourself soon.

Julie

[janiedelite]

Thanks Julie. I was hoping to hear from you about this. I think I haven't received appropriate treatment yet because my PCP has attributed my nausea and pain to reflux (which I have quite severely). And when she saw that I did have small bowel dysmotility, she said the only treatment she knew of was reglan, but that it mostly worked on the stomach and had bad side effects. I should have pushed for a GI consult, but as things go, I was in a fairly good phase at the time and didn't push for it.

Thanks for the advice about dairy. I really don't know what to do during these episodes. There's very little info on the web about small bowel dysmotility unless you have an actual obstruction. I do have chicken broth here and will do the white flour foods for a while. It's totally opposite of the usual whole grains I cook with, but obviously my diet isn't working!

Yes, I do notice that if I can get my colon moving my upper GI issues are a bit better. I've mentioned this to several docs and have been told to take colace, oral fiber supplements (I take benefiber), and recently was told to take milk of magnesia. I think if I can get into a good GI doc, they'll be able to help me with this too.

I've been forcing myself to eat (probably not the best idea) and taking phenergan to keep it down. I also force fluids, although it's getting harder as the nausea gets worse. I don't want to get dehydrated and go to the ER... although it might be the fastest way to a GI consult . Still, it's not worth it!

Thanks again, for your informative post. Hope you and Mack are well,

Janie

[gwensvilla]

have to second macks mom....just been to london to see our pots specialist, Prof Mathias.. my daughter he referred to a gi expert, and she was prescribed erythromycin small dose and domperidone also..plus another one.. will need to look it up... and that has sorted the motility, stopped the nausea... and now from the forum, I know how and why!!!! Gwen

[juliegee]

Hey Janie-

You were right not to take reglan. Your doc is wrong about one thing- it does work on the small bowel BUT she was right about the the side effects. They can be horrendous. It crosses the blood/brain barrier and you can (rarely) end up with permanent neurological side effects. Mack took this for months and was unable to sit still. He paced incessantly. I have even recently seen lawyers on TV looking for patients who've been prescribed reglan.

Dangerous advice about the fiber. STOP THAT BENEFIBER! Folks like us swell up from it , but it doesn't move through most likely because our nerves in the small bowel aren't working properly. It can actually cause obstructions. Milk of Magnesia is OK long term, but Miralax is probably better. It doesn't taste at all & rarely causes me to have significant nausea. Doses can be broken up throughout the day to make taking it even easier. It doesn't give you an uncontrollable result at a bad time,,,if you know what I mean. Miralax (even at my dose) makes me feel normal. Hooking up with a knowledgeable GI would be a great idea. Be careful though- so many aren't very knowledgeable about motility issues. Ask around to find someone who regularly works with patients like you. You've done a great job getting a DX, I've got me fingers crossed that you can find someone local to help manage things for you.

One last thing, like you I was taking old phenergan. Mine was from 2007! It did the job without making me very sleepy. My doc recently wrote me a new prescription and I took 1/2 a tablet (as usual) and was completely knocked out. The next day I was a zombie and could barely function. Your phenergan may have lost some "punch" and the new ones could be really powerful. I'm only taking 1/4 tablet and I get the same effect as my old pills

Gwen, so glad to see that GI docs across the pond are using erythromycin too. It was the drug of choice by Johns Hopkins 4 years ago when my son was very sick. Our local pediatric GI pooh-poohed it for reglan. He pushed that awful drug on Mack until I threatened to change doctors unless he wrote a script for "E" pronto. Hopkins backed up that decision a few months later. It was hard to go against a doctor's advice, but I could see with my own eyes what reglan was doing to my son. AND, you are very lucky to be able to pick-up domperidone so easily. My husband was in England recently and picked up some "Motillium" for Mack to have on hand for a back up.

All the best-

Julie

[gertie]

The only advice I could give you would be don't use Metamucil or any fiber drinks. That type fiber added to my problem. Not only was I constipated I ended up having anal tears from it. I eat white rice, white bread, bland foods, everything the dr's say is unhealthy. I can't take Miralax but I can tolerate a small glass of prune juice before breakfast which helps some. An old remedy if you can tolerate it is raw kraut unpasteurized, never heated. Start with about 1 tblsp & increase daily. It gets the digestive juices going. good luck.

[janiedelite]

Awesome advice, Mack's mom. I've had a little lean chicken and pork, some white bread and a peeled baked potato and my tummy is so much happer!!!

Wow. Thanks for the advice about the benefiber. No wonder I'm so bloated . I'm going to definitely look into the miralax to get things moving on the south end. And thanks for the advice about getting a new phenergan script!

For now, it looks like I'll be on the low fiber, bland diet until I get through this episode. I will make an appt with a GI doc who understands dysmotility (Oh, I hope they're experienced... I hate doctor shopping...)!

[juliegee]

So happy you're feeling better!!!!! I hope the nausea will subside with a better diet, etc. Let us know.

Julie

[janiedelite]

Well, the nausea and headache was back with a vengeance Sunday morning. I get hungry sometimes, too, but have such bad pain a couple hours after I eat. So I called the GI office and asked for a doc that my mom saw earlier this year. I get to see her October 14th ! I know this episode will settle down sometime soon, and I can go get IV fluids/nausea meds at the ER if I have to. I've been keeping track of my fluid intake and have been drinking at least 2 liters a day.

It's just not fun being sick!!!

[Guest tearose]

There are excellent products that are helpful instead of heading for the ER and an IV. Try ordering some adult supplement shakes or soups that your GI doc should tell you about. You can also research these yourself. I always have some on hand for times that digestion is an issue.

I recently had an obstruction that sent me to the hospital so I too need to always be aware of the right mix of fiber and fluids and rate of digestion!!!

It is a daily job managing a POTS body effectively!

[janiedelite]

Thanks Tearose. I'll keep those supplements in mind. And yes, it is a fine balance of what kinds of foods to eat. I'm glad you've recovered from your obstruction.

[janiedelite]

Well I'd put a call into my PCP asking for something for nausea. She called me and when she heard my symptoms, she said she thinks I have abdominal migraines. She knows I have dysmotility, which she attributes to neuropathy. But she said the nausea along with the headache makes the abdominal migraine more likely, and that if I can take a migraine med before an episode gets severe that I might get relief from both the headache and abdominal pain. She also said to keep a symptom log for the GI doc when I see her in October. Most importantly, she called in some phenergan! I'm thankful for that!

[juliegee]

Janie-

Sorry things are bad again. Yes, phenergan is a godsend at times! I don't know much about abdominal migraines, but I will do some research. I think I have that too....awful migraines with nausea.

Julie